Crohns/IBD and pregnancy - symptoms and meds?

[WolfMother326]

Hello everyone,

I am 7.5 weeks right now. I had relatively inactive Crohns before falling pregnant, and have never been on medication just managed symptoms by adjusting diet during flares and buscopan when needed. Now, though, I seem to be getting a flare up every other week. No diarrhea, just bad bowel pain that's been keeping me up at night. Not fun on top of nausea and tiredness! My gastro dr wants me to start medication but I'm unsure what the best course of action would be.

I'm curious if anyone else has a story about Crohns/IBD and pregnancy. Did you take medication? What was your experience?

Thanks.

I wasn't diagnosed until about 3 years after my pregnancy. Although I had symptoms from a very young age. Pregnancy definitely made it worse!

What meds have they offered? I have UC, so a little different- as I would use the foam or suppositories.

Hi @saffire, thanks for replying. Good to hear you got a diagnosis.

I've been offered either a short course of steroids (6-8 weeks) or to go on bioligics for the second trimester. I would probably do the latter in normal circumstances, but am worried as they are immunosuppressants and that doesn't sound good with Coronavirus... Hoping to find out more when I start seeing an obstetric physician/specialist.

I suppose I'm worried about miscarriage risk or that my inflammation will hurt the baby - not to mention it's bloody unpleasant!

I have UC and had a flare up. Currently on a 2 month course of Pentasa and Octasa. These were prescribed by the gastroenterologist and also checked with my consultant. I was told the most important thing is to get it back under control, both medications are fine to take during pregnancy.

Thanks @Grognonne. How far along are you and when did the symptoms start? Did you have active symptoms/flares before begging pregnant? I hope the medicines help you feel better soon!

I have active crohns and am 16+5 weeks pregnant.

Currently on azathioprine (150mg daily) and ustekinumab (injected yesterday and will do again in 8 weeks). I've been advised to stick with azathioprine but only have biologic up to second trimester and not in third.

My crohns is complex and I was managing it well on medication mentioned above, no worsening of symptoms apart from constipation in first 8-10 weeks and then runny movements at about 14-16 weeks. Seems to be levelling off now though.

I hadn't had active symptoms pre-conception apart from peri-anal abscesses which are draining with a seton stitch. But had that for well over a year now anyway :)

I had inactive UC pre pregnancy, remission and no meds, also managed via diet etc. Started flaring at 8 weeks but (stupidly in retrospect) resisted prednislone until 16 weeks so it got progressively worse. Started on 60mg a day and had to taper down with the goal to be steroid free at birth but every time I got to around 20mg the flare would start up again so I stayed on the pred all pregnancy. Baby was fine!

After pregnancy I was put on biologics as they decided steroids clearly didn’t work. Second pregnancy I was advised to just keep on the biologics until third trimester. No flares at all yet! Such a difference to the first time round when I was so unwell.

IBD is rotten isn’t it? 😞

Thanks @samlh that's really helpful. I hope it all keeps working out for you.

@chylerv thank you - it is rotten! Hearing this, I think I might go with biologics, that's what my gastro dr thinks is best. I hope you keep feeling well!

@WolfMother326 Hope they work for you and you’re feeling better soon!

Thanks @chylerv. May I also ask which biologic you're on, and whether you've had any major side effects?

I've had Crohns for around 2 years now, managed by Octasa 800mg. It was fairly inactive unless I ate something that really didn't agree with me, but during pregnancy (currently 29 weeks) it's been awful. It was hard to tell if some symptoms were pregnancy related or a genuine flare up, but I've had quite a bit of blood when going to the toilet. I told my midwife and I've been given 2 extra scans (32 and 36 weeks) to keep an eye on growth just in case which is reassuring. I've brought my recent symptoms up to my specialist and they've told me to stay on my meds and pregnancy can sometimes make Crohns worse, and in some woman stop it completely, it's just your luck! I did stop my meds for around a month at the start of pregnancy for the same reasons as you, I was terrified it would be dangerous but they've assured me it's completely safe to take and I should have continued to take them as normal at the start. I've been provided extra meds, can't remember the name of them but it's just a one month prescription to help clear any possible infection. If you're really uncomfortable then I'd go on the meds, once you chat with your specialist they will be able to talk through your options. Hope it gets better soon!

@WolfMother326 I’ve on adlimumab and haven’t had any side effects at all (touch wood!!)

Thanks @Amelia49 for responding, that's helpful to hear. I hope everything goes well for you and you feel even better soon. Good you are getting extra monitoring.

Thanks @chylerv, that is great news - that's the one they've recommended for me. Really appreciate hearing your experience.

In my first pregnancy I was on Humira and came off it immediately and was determined it was going to be fine. It was not, I went into a major flare up at about 20w and then at 28w ended up in hospital with a small bowel obstruction and needed IV steroids. Stayed on steroids until the end and a v restrictive “little and often” diet. Baby was born slightly early but was a good weight. I however was extremely thin underneath the pregnancy and it took a while to recover that. I guess the point of all this is to try to make sure you nip any symptoms in the bud quite quickly. If I had my time again I’d have gone on something after 12w to keep things at bay.

@WolfMother326 hi, I am 21 weeks now and just over halfway through the course. I was diagnosed in April (before pregnancy) and took a 6 week course, then was tested and in remission. Started to notice symptoms about 14 weeks into pregnancy and that’s when I got put on the medication. Luckily I caught it early unlike last time. The tablets and suppositories are working well and all feels back to normal. It’s best to try and keep in under control, I’d hate for it to get very bad and have to have part of my bowel removed!

Thanks @Jchina, so glad you ended up having a healthy baby although that sounds very stressful. Helpful to consider that advice and makes me think I should be proactive.

@Grognonne so glad you are feeling back to normal. Fingers crossed you continue to feel healthy for the whole pregnancy!

Hi everyone, how are you all feeling? Still managing symptoms?

I am just over 13 weeks now and will be starting Adalimumab (Humira) in about a month. I am relatively asymptomatic at the moment, just feel some twinges in my bowel now and then, but my test results have shown really high levels of inflammation so my gastro dr and obstetrican want me to do a short course of biologics in the end of the second and beginning of the third trimester - probably about 8 weeks in total and then stop by 32 weeks.

As part of this, they have offered me the covid vaccine before beginning, to balance out the risk of using an immonusuppressant.

I am feeling quite nervous about it all, but having been reading up it seems like both things will be ok. I would rather not have a bad flare up in the third trimester, or get a severe case of covid while pregnant and immunosuppressed. Any encouraging words would be welcome!

@Grognonne @samlh @chylerv @Amelia49 - would love to hear how you're doing!

Hello! That's good you're not having any major flare ups but definitely would recommend going on medication to avoid it if your results are showing signs. I had terrible flare ups mainly in the second trimester and then was prescribed a 1 month course of medication to take away possible infection and it worked! Not had any symptoms since and feel much better, so they can really make a difference. I've not been offered the vaccine, I'm not sure what I would do tbh, I think as long as you've done your research and your midwife thinks it's a good idea then it should be fine.

Thanks @Amelia49 that's really reassuring. Yes, I think it's best to listen to the midwife, obstetrician and gastro doctor, and will take the medicine they've prescribed and also the vaccine. I feel ok about both, having read up on them quite a lot over the weekend.

So glad to hear you're feeling better after the extra 1 month course of medication - you must be getting close to delivering now! I hope the extra scans you had have also been helpful and shown that the baby is growing just right!

Hi, that’s great you have got a plan together. I finished my course and all seems back to normal. Am 27 weeks now and all seems like it’s going ok. I do need to arrange a stool test to make sure the disease is under control, but keep putting it off!

@Grognonne so glad to hear that you're feeling well and everything is under control. I hope the stool test shows low inflammation levels and that the rest of the pregnancy goes smoothly.

I do feel relieved to have a treatment plan now, but I'm also a little nervous as I've never actually taken medicine for my Crohns so it will be a new experience. Working on being grateful to have good options. Sometimes it's just terrifying being pregnant, I am so protective of the baby, but trying to remember that this plan will help the baby be healthier too.

@WolfMother326 I am doing okay thanks. Gone from exceedingly constipated to running the loo more often (I don't know what's worse).

Blood tests all come back with low levels of inflammation and I am due to take my last Ustekinumab early March (they have advised to stop before 3rd trimester).

I've not been offered the vaccine, but at this point I would rather wait until baby is here if i'm being totally honest.

I'm glad you have a treatment plan in place! Hope you're doing okay

x